Sunday, February 7, 2010

Praying to stay out of the hospital

Friday Tomas had his one year check up. He had started breathing just a teenie bit harder than normal and sounded slightly congested. His doctor was not impressed with the symptoms, and really it was so slight it is pretty much the only mamma can tell the difference thing. However, beacuse Tomas has broken out with quite a few petechiae (small red spots that don't blanche under pressure) he ordered a CBC. The rash can be indicitive of a low platelet count, and since he has a history it was time to check.

His platelet count and RBC were both normal (yeah), but his ANC (infection fighting WBCs) was back down again, and his overall WBC was high. The pediatrician said that probably means he has a virus. He said they are seeing some other nasty stuff other than just RSV this year. To try to make it through the weekend and call if I needed anything.

Yesterday he was breathing harder than normal (even for those who are not his mommy), and bouncing his O2. I increased his neb treatments to every 3 hours and put him on O2 for the whole day. He ended up at 1 1/2 liters per minute. 2 Lpm is as high as I can go at home because he is still so little (16 lbs. 2 oz. - he was born at 5 and we have fought for every ounce of those 11 pounds thank you very much!). This morning he had a coughing spell around 4 am (again, why do these things never happen at 4pm?????), but I suctioned him and he went back to sleep for a while. He is holding his own and I am hoping that just staying on top of his breathing treatments will be enough to help him fight this off. Today he has had periods of looking tired and out of it, but then will bounce back and be his playful happy self, so keep your fingers crossed!

Here is his rash - it is hard to see the redness with the camera but he looks a lot like Opie from Mayberry. The first time it happened I was really worried they would be permanent, but they fade after a little while.

All about Tomas

When I was around 5 months pregnant an ultrasound revealed a birth defect (duodenal atresia - a blockage between the intestines and stomach) in Tomas which also meant he had a high chance of being a Down Syndrome baby. About a month before he was born I had an amnio that showed he did indeed have DS. He was born on January 16, 2009 and had his first surgery when he was 32 hours old. After that, test result after test result rolled in. In the first month my family learned he had three holes in his heart, his liver was not working, and he had Transient Myeloproliferative disorder (a type of leukemia which resolves in the first few months of life). The second month revealed laryngomalacia (a collapsing larynx), primary and secondary aspiration, and severe reflux. He was switched to tube feedings and had his second surgery to correct the reflux that was causing him to suffocate. The TMD resolved when he was 4 months old, his liver started working when he was 5 months old, and the holes in his heart have closed without intervention. After that we found out his left lung is partially collapsed, he has a stomach hernia and a liver hernia and multiple bowel hernias, and was recently diagnosed with neutropenia. He had another 2 surgeries. He is on J-tube feedings, requires oxygen support, needs to be on a pulse oximeter monitor, and has 10 specialists who follow him. He is exactly what I never knew I wanted. He has taken our family and carried all of us to a place where every smile matters, where the days breathe with possibilities, and joy reigns supreme.

"The real choice in accepting or rejecting a child with special needs is never between some imaginary perfection or imperfection. The
real choice is between love and unlove, between courage and cowardice, between trust and fear. And that’s the choice we face as a society in deciding which human lives we will treat as valuable, and which we will not. "